"I'm going to push this door open. You can close it": A qualitative study of the brokering work of oncology clinic nurses in introducing early palliative care.

BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses. DESIGN: A constructivist qualitative grounded theory study was conducted. SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center. RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward. CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.

Factors associated with discharge disposition on an acute palliative care unit.

PURPOSE: Acute palliative care units (APCUs) admit patients with cancer for symptom control, transition to community palliative care units or hospice (CPCU/H), or end-of-life care. Prognostication early in the course of admission is crucial for decision-making. We retrospectively evaluated factors associated with patients' discharge disposition on an APCU in a cancer center. METHODS: We evaluated demographic, administrative, and clinical data for all patients admitted to the APCU in 2015. Clinical data included cancer diagnosis, delirium screening, and Edmonton Symptom Assessment System (ESAS) symptoms. An ESAS sub-score composed of fatigue, drowsiness, shortness of breath, and appetite (FDSA) was also investigated. Factors associated with patients' discharge disposition (home, CPCU/H, died on APCU) were identified using three-level multinomial logistic regression. RESULTS: Among 280 patients, the median age was 65.5 and median length of stay was 10 days; 155 (55.4%) were admitted for symptom control, 65 (23.2%) for transition to CPCU/H, and 60 (21.4%) for terminal care. Discharge dispositions were as follows: 156 (55.7%) died, 63 (22.5%) returned home, and 61 (21.8%) were transferred to CPCU/H. On multivariable analysis, patients who died were less likely to be older (OR 0.97, p = 0.01), or to be admitted for symptom control (OR 0.06, p < 0.0001), and more likely to have a higher FDSA score 21-40 (OR 3.02, p = 0.004). Patients discharged to CPCU/H were less likely to have been admitted for symptom control (OR 0.06, p < 0.0001). CONCLUSION: Age, reason for admission, and the FDSA symptom cluster on admission are variables that can inform clinicians about probable discharge disposition on an APCU.

Experiences and Expectations of Bereavement Contact among Caregivers of Patients with Advanced Cancer.

BACKGROUND: Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers. OBJECTIVE: Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP). DESIGN: Semistructured qualitative interviews were conducted with 61 bereaved caregivers. SUBJECTS: Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures. APPROACH: In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data. RESULTS: Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes "contact reflects caring," "contact offers support," and "contact facilitates closure" were prominent among those who were contacted. "Contact is a courtesy," "contact is not always necessary," and "caregiver-initiated contact" were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported. CONCLUSIONS: Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.

Engagement of Primary Care Physicians in Home Palliative Care.

PURPOSE: To describe prevalence and characteristics associated with family physician and general practitioner (FP/GP) provision of home palliative care (HPC). METHODS: We surveyed FP/GPs in an urban health region of Ontario, Canada, to determine their current involvement in HPC, the nature of services provided, and perceived barriers and enablers. RESULTS: A total of 1439 surveys were mailed. Of the 302 FP/GP respondents, 295 provided replies regarding engagement in HPC: 101 of 295 (33%) provided HPC, 76 (26%) were engageable with further support, and 118 (40%) were not engageable regardless of support. The most substantial barrier was time to provide home visits (81%). Engaged FP/GPs were most likely to be working with another physician providing HPC ( P < .0001). Engageable FP/GPs were younger ( P = .007) and placed greater value on improved remuneration ( P < .001) than the other groups. Nonengageable physicians were most likely to view time as a barrier ( P < .0001) and to lack interest in PC ( P = .03). CONCLUSION: One-third of FP/GPs provide HPC. A cohort of younger physicians could be engageable with adequate support. Integrated practices including collaboration with specialist PC colleagues should be encouraged and supported.

Advance directives in patients with advanced cancer receiving active treatment: attitudes, prevalence, and barriers.

PURPOSE: The purposes of the study were to assess awareness and prevalence of advance directives (ADs) among patients with advanced cancer undergoing active outpatient care and to determine factors associated with AD completion before and after the diagnosis of cancer. METHODS: Patients with advanced solid tumor malignancy receiving treatment at the Chemotherapy Day Unit were approached for recruitment. They completed an onsite questionnaire about completion and timing of ADs, demographic information, and perceived health; a review of their medical records was conducted to document their cancer care and co-morbidities. Multinomial logistic regression analysis identified factors associated with the timing of AD completion (pre-cancer, post-cancer, or not at all). RESULTS: Two hundred patients were enrolled, with 193 surveys available for analysis. ADs were completed in 55 % (106/193) of patients, including a living will in 33 % (63/193), a power of attorney in 49 % (95/193), and a do-not-resuscitate (DNR) designation in 18 % (35/193). Most patients (53 %) had completed an AD before being diagnosed with cancer. Higher income (p = 0.02) and age (p = 0.004) were associated with AD completion pre-cancer diagnosis; discussion of end-of-life care (p = 0.02) and palliative care referral (p < 0.0001) were associated with AD completion post-cancer diagnosis. CONCLUSIONS: This study demonstrates that different factors may influence the completion of ADs before and after a diagnosis of cancer and highlights the potential for early palliative care to impact the completion of ADs in patients with advanced cancer who are undergoing active cancer treatment.

Quality of Care and Satisfaction With Care on Palliative Care Units.

CONTEXT: There is little research on quality of care specific to palliative care units (PCUs). OBJECTIVES: To delineate important aspects of satisfaction with care and quality of care on a PCU, as described by inpatients, family caregivers, and health care professionals. METHODS: Qualitative interviews and focus groups were conducted across four Toronto PCUs, with a total of 46 patient/caregiver interviews and eight staff focus groups. Interviews and focus groups were semistructured to elicit comments about satisfaction with care and quality of care for inpatients and families on a PCU. Data were analyzed using a grounded theory method, with an inductive, constant comparison approach to identify themes, and were coded to saturation. RESULTS: Key elements of quality care and patient satisfaction on a PCU were grouped into six domains: 1) interprofessional team: a team of experts comprising multiple disciplines functioning as a unit; 2) communication: developing rapport, addressing expectations, providing information, listening actively, and facilitating end-of-life discussions; 3) attentive, personalized care: anticipatory and responsive compassionate care with tailored management of physical and nonphysical symptoms; 4) family-centered: support of patients and caregivers within a family; 5) accessible and consistent: appropriate resources and adequate staff to provide consistent care; and 6) supportive setting: a bright noninstitutionalized setting allowing both privacy and socialization. CONCLUSION: The elements identified support the delivery of quality care. They may act as a guide for those planning to develop PCUs and form the basis for measures of satisfaction with care.

Communication and Quality of Care on Palliative Care Units: A Qualitative Study.

BACKGROUND: Clinician-patient communication is central in palliative care, but it has not been described qualitatively which specific elements of communication are important for high-quality palliative care, particularly in the inpatient setting. OBJECTIVE: Our aim was to identify elements of communication that are central to quality of care and satisfaction with care on palliative care units (PCUs), as described by inpatients, family caregivers, and health care providers. METHODS: Qualitative interviews with patients/caregivers and focus groups with staff were conducted on four PCUs. Semi-structured interviews and focus groups elicited thoughts about the characteristics of satisfaction with care and quality of care for PCU inpatients and their family caregivers. Data were analyzed using a grounded theory method with an inductive, constant comparison approach; themes were coded to saturation. RESULTS: There were 46 interviews and eight focus groups. Communication was the most prevalent theme regarding satisfaction and quality of care, with five subthemes describing elements important to patients, caregivers, and staff. These included: 1) building rapport with patients and families to build trust and kinship; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient's condition; 4) listening actively to validate patients' concerns and individual needs; and 5) providing a safe space for conversations about death and dying. CONCLUSIONS: Patients, family caregivers, and health care providers affirmed that communication is a central element of quality of care and family satisfaction on PCUs. The five subthemes identified may serve as a structure for education and for quality improvement tools in palliative care inpatient settings.

Timing of code status documentation and end-of-life outcomes in patients admitted to an oncology ward.

PURPOSE: Guidelines recommend documentation of care preferences for patients with advanced cancer upon hospital admission.We assessed end-of-life outcomes for patients who did or did not have code status (CS) documented within 48 h of admission. METHODS: This was a retrospective cohort study of patients who died on an inpatient oncology ward between January 2004 and February 2009. Primary end-of-life outcomes were "code blues" and cardiopulmonary resuscitation (CPR) attempts; secondary outcomes included unsuccessful CPR attempts, intensive care unit (ICU), consultations, and ICU admissions. Using logistic regression, outcomes were compared between those with and without CS documentation ≤ 48 h from admission (full code or do-not-resuscitate), controlling for significant confounders. RESULTS: The 336 patients had a median age of 61 years; 97 % had advanced cancer. The median time from admission to death was 12 days (range <1-197 days); 151 patients (45 %) had CS documentation ≤ 48 h from admission. Controlling for confounders of reason for admission and marital status, patients with CS documentation ≤ 48 h from admission had fewer "code blues" (2 vs. 15 %; adjusted odds ratio(AOR) 0.12, 95% confidence interval (CI) 0.02-0.43), CPR attempts (1 vs. 11 %; AOR 0.12, 95 % CI 0.01-0.51), unsuccessful CPR attempts (0 vs. 11 %), ICU consultations (9 vs. 30 %; AOR 0.19, 95 % CI 0.08-0.40) and ICU admissions (2 vs. 5 %; AOR 0.18, 95 %CI 0.02-0.85). CONCLUSIONS: In patients who died on an oncology ward, CS documentation within 48 h of admission was associated with less aggressive end-of-life care, regardless of the reason for admission.

Availability of services in Ontario hospices and hospitals providing inpatient palliative care.

PURPOSE: Most Canadians die in inpatient settings. Our aim was to determine the availability of medical services, programs, and care for common palliative procedures, in hospices, palliative care units (PCUs), and hospital medical wards (MWs) providing inpatient palliative care in Ontario, Canada. METHODS: We identified facilities providing inpatient palliative care using the Ontario Hospital Association (OHA) and Hospice Association of Ontario (HAO) websites. An electronic survey was sent to the person responsible for palliative care at each facility. We compared services available among the three types of units, using Fisher's exact and Kruskal-Wallis tests. RESULTS: Of 128 surveys sent, 102 (80%) were completed and returned, from 58 MWs, 31 PCUs, and 13 hospices. MWs were the most common location of palliative care overall, particularly in rural areas. PCUs were most likely to provide care for common procedures (e.g., tracheostomy, nephrostomy; p<0.01); methadone for pain management (p<0.0001); and palliative radiation (p<0.01). MWs were most likely to offer intravenous chemotherapy and antibiotics (p<0.01). Transfusions were available in most PCUs and MWs, but only in one hospice (p<0.0001). Hospices were most likely to provide complementary therapies. Lack of financial support and human resources were the most frequent perceived barriers to providing quality palliative care. CONCLUSIONS: There is considerable variability of available services depending on the setting where inpatient palliative care is provided. Further financial support and resources are required to ensure consistent high quality of care in both urban and rural areas.